5.29.2013

What I'm thinking about these days

An insight into me (my good friend calls this "the magic of me" when referring to herself and I think that's quite a nice term)- I usually take in more information than my poor brain can process, leaving me overwhelmed and in a crazy mumbling- to-myself state. Which isn't good, for anyone involved.

So, since you're stuck there reading this page, I will unload some of the stuff that's been clogging up my neural pathways as of late. Maybe we can even make sense of some of it together.

I've read few interesting things these past couple of weeks, from various points of view (dare I say conflicting even?) which made me pause, reflect and evaluate my values and perspectives once again. As an aside, when I started blogging I was slightly bemused by how many other autism blogs had "journey" somewhere in the title or description. Now I see that in fact it is a journey, with changing landscapes and new discoveries to be made all the time. A journey into the unknown and with no tour guide to lead the way. But for the sake of accurate record-keeping I think it is valid to include the conundrums as well, as they provide a snapshot of where on the journey I am now.

Good points made;

  • On judgement
  • On being Carly'd (this was particularly relevant to me. I have been Carly'd and Temple Grandin'ed to bits. Temple Grandin is very inspirational obviously but it's akin to chatting up a neurotypical 3 year old boy's mom- "ah, boy, eh? Have you heard of Clint Eastwood? He was once a boy too").
  • On elopement (and judgement)

If you haven't yet read any of those eloquent entries I'd recommend you do. Given the (deserved) response they received, I can say that they touched a nerve within the population of autistic parents. The gist of all these voices (but don't rely on my gist, read them all if you haven't already) is- parents of autistic children want the best for their kids, just like parents of neurotypical kids; we don't want endless advice, constant judgement or inspirational stories of "autistic kids who made it". Sometimes we do things differently, we often wish we didn't have to, but ultimately we will go to any lengths to keep our children safe, not out of need to control, but out of love.

Also a good point;

On presuming competence. Reading this blog, I am inspired for a different reason. This lady chronicles her journey (there's that word again) raising Emma, a girl who can seemingly be considered "low-functioning" (not unlike how Sophie might be seen) but like Sophie with a lot of gifts to offer. Her blog is more reflective and introspective, and makes me think a lot of how I view Sophie, focusing on presuming she "can" and not assuming she "can't" and giving her tools she needs to succeed. Success of course can be measured in many ways. The running theme of the blog is how her daughter's autism affects the author and the separation that must be made between the mother and daughter. The daughter is a sentient being not an extension of the mother. I think it's worthwhile to pause and reflect on that thought for a bit- it is often tempting to project our own feelings onto our kids. We have to be able to own them and distinguish them as our own. We might feel lost, scared, overwhelmed or hopeless even. We shouldn't assume our kids do as well. Something for me to think about as Sophie grows.

The books

I mentioned I bought "the Spark" and found it inspiring. But not because of the boy-genius part. That part was certainly interesting, in a way all biographies of extraordinary people are interesting (to me anyway). What I was most inspired by was the mom, not unlike me in many ways. I too have several children close in age, ran a home daycare and aspire to follow my children's natural talents. But I was amazed at her perseverance. Whereas I, when Sophie was diagnosed and my youngest was born held off on my daycare (save for one older child after school), she continued! And her baby was significantly sick for the first year of his life. She also ran an autism playgroup, an idea which my husband and I kicked around often. Why didn't pursue? Excuses. Good ones I thought, but obviously not good enough. If she could run a home daycare with a sick baby in the sling (my sling baby is healthy, thank goodness) and autistic toddler and find time to do a therapy group, perhaps our dreams of having a not-for-profit sensory gym in our community are attainable as well. So what did the book give me? The ability to dream big again and that is a good thing.

Understanding autism though Rapid Prompt Method. I'm still reading this one so maybe will write a bit more about it when I'm done. For now I will say intriguing, will probably try some of her techniques in the future (won't hurt right?). She seems to have an accurate description of autism and the way if affects sensory processing, based on my own observations at least.

There, I feel better now. A moment in time, Sophie's mom on this stop of the great autism trip. I'd love to know where your journey is taking you these days!

They have their own things to worry about

 

5.23.2013

Reason to be cheerful- Sophie is 3!

I decided to hop along on this blog hop because I love the title. Reasons to be cheerful indeed. My girl is three years old today and I think she knows it! Well, she knows there seems to be an abundance of cupcakes, so that's a start right?

Reasons to be Cheerful at Mummy from the Heart

Birthdays can be a bittersweet time for parents of special-needs kids. They can mark yet another year gone by with not as much progress as we hoped for, or be a blatant reminder of how far behind their peers our kids are. Sophie doesn't act like a 3 year old if I really think about it. I say really think because in truth I don't usually define Sophie as an age or as what she "should" be doing. Sophie is more like an ageless being in my mind, a bright spirit with her own developmental trajectory. There is no point trying to pinpoint an age to her because while she might act like an 18 month old child in many ways, I do see glimpses of a wisdom way beyond that level in her eyes.

This year was a period of such growth and a new awareness of the world and I'm not just talking about her, but me as well. Around this time last year we were lost, grieved, sick with worry. This birthday finds us at peace, filled with love and wonder for our child, and not making a list of expectations for her (or us) to fulfill. And so here follows the list of things that make me happy TODAY (I'll think about tomorrow when it gets here).

What makes me cheerful today:

  • I stayed up late last night making chocolate cupcakes with strawberry frosting and they turned out really good!
  • We took some of the cupcakes to our playgroup this morning and we sang "happy birthday" to Sophie and she actually sat at the table and listened before running off. She liked the cupcakes too, which is great (she doesn't usually want to try a food she hasn't had in a while and I don't think she ever had pink frosting before! She did like it once she tried it, of course)
  • We had the big kids come after school along with a couple neighbourhood friends for cupcake session #2 and another "happy birthday" rendition.
  • I do believe that Thomas did his magic and the birthday episodes I've been playing for her this week planted the birthday idea in her mind because she perked up her ears and listened to all the happy birthday talk.
  • I have a giant tub of homemade strawberry frosting in my fridge, how's that for a reason to be cheerful ;)

And now, a picture essay of what ensues after this mother requests one decent photo with all siblings together, looking and smiling at general direction of camera.


And those are my reasons to be cheerful!

5.16.2013

When you thought you waited long enough... wait some more

No, this isn't another wait list post. This is something I recently noticed about Sophie and think it might be worth passing along.

I noticed that often Sophie needs much longer than typical to react to a situation. Like, minutes longer at least. But oh it's so worth the wait. Here are some examples.

Incident 1- "the sippy cup"

playgroup at Silvercreek nursery school

We were doing our thing there as usual, the gym, the bead mazes, Sophie being her usual seemingly-oblivious-to-her-surroundings self. I say seemingly because she snaps to attention at will, and always has that look of head cocked to the side eavesdropping. She was wandering around with her sippy cup and at one point it'd gone missing. At home time I and a couple teachers started looking for it, asking if anybody saw it, generally putting out a "missing cup alert". Sophie was doing her bead maze unconcerned. I was gathering my stuff to leave but still looking around for it (it was a good cup!) while the rest of the playgroup left gradually. I guess at some point it sunk in for Sophie that "hey, seems like home time is dependant on finding this cup", because all of a sudden she stopped with the beads, walked next door to the gym, purposefully fetched the cup from where she must've left it and came back to us casually sipping on it. That produced a laugh out of the teachers but for me was yet another proof that she knows, understands and remembers much more than she lets on.

Incident 2 "the snoezolean"

Silvercreek again

This example illustrates Sophie's self-awareness and knowing what she needs and how to get it.

While playing at the bead maze table, Sophie somehow slipped down and bumped her chin, cutting her lip pretty badly with her teeth and producing a significant amount of blood. Needless to say she was very upset, actually more upset than I've seen her in a long time. Since she only recently started having tantrums I don't really have a "tantrum protocol" yet, so I was just observing her and making mental notes. She ran out of the playroom and into the hallway which was a good decision I thought since it was quiet and less stimulating. I sat there with her as she was trying to calm down but couldn't. So I led her to the empty gym which has a padded area since she was thrashing around. I talked to her soothingly, mostly quiet reassurances and "shhhhh" (to soothe, not to quiet). I was contemplating just cutting my losses and leaving, but didn't because with baby in sling, diaper bag and trashing-around Sophie we wouldn't make it to the car. So I waited.

Looks kind of like this

Again as she noticed it was totally up to her, she very deliberately got up and stomped down the hall all the way to the front of the school where they have a snoezolean room set up. She pulled a large object out of the way, opened the door and entered the darkened room. Inspired by her initiative, I set her up with all the lights and the bubble light tube she loves. They have a hammock in one corner so I put her in there and rocked her. She took about 10 minutes, centred herself and then, amazingly, got up and walked back to the playroom! Completely unprompted. It was home time by then, we entered at goodbye song, but she was greeted warmly and did I detect a self-satisfied smile? She was totally calm and in control and walked to the car holding my hand.

Both of these events took place when for some reason I was stalling with my own reactions (both times because bogged down with baby and bag, so moving slowly). If in the first example I just quickly decided to abandon the cup and look for it next time, I wouldn't have known that Sophie understood our discussion and was able to recall where the cup was. If in the next event I just left when she hurt herself, I would've missed her knowing what she needed to calm down and equally important, that she would've cared to rejoin the playgroup afterwards. Sophie like many autistic kids has the "I don't care" look so it is nice to know she does care. It is worth to note that she was only in the snoezolean room once before, about 2 months ago when we had our first tour of the facility.

Many smaller, less profound incidents gave me pause. Like talking to her, more out of habit than expecting a response and her following through (come get your shoes, brush your teeth, lets go to bed, etc). The reason I am surprised is because often she seems like she isn't listening. But now I think she just needs extra time to let things sink in. Like maybe when we are caught up reading or engrossed in a movie and someone talks to us and it takes a while to register and respond. So maybe I will try leaving more pauses and opportunities for her to act before rushing in to take over impatiently. Hopefully as she acquires a taste for initiative, the reaction time will shorten. Interesting, no?

 

5.12.2013

Mother's Day and what Sparks me

I told my family that I don't want any gifts or breakfasts in bed today. What I asked for instead was their time. Not a ridiculous amount of time doing AMAZINGLY FUN FAMILY-TOGETHER things (that sounds exhausting). But a lingering coffee in the morning and a family outing to Chapters. I wanted to buy a book. Yes, yes that book.

Two adults with four children going to a bookstore all together are not likely to be able to browse freely and flip leisurely through books. Instead we take a divide and conquer approach, or rather we disperse throughout the store, one adult staying with each baby (the older kids can be trusted to behave in a civilized fashion unsupervised). Sophie loves outings, of course on her own terms. I feebly tried to interest her in the toy area but she pushed me away impatiently. Pastel-coloured doo-dads and retro-charm wooden "educational toys" don't interest her in the least. Instead she found an enticing corner to establish a run-between path. I know better than to fight against her paths so I just absent-mindedly glanced up to see which department we were in. Ah autism. That was certainly convenient, thanks Soaps. At one point while hanging there I had Sophie running to and fro humming at my side, an autism book array in front of me and Heather on the loudspeaker advertising the very book I came to get. It was a surreal moment in which I thought "wow autism is all around me".

We took turns managing Sophie and her paths (she stays for a while at one and then suddenly she is done with it and moves on to establish another). At one point I saw a couple girls around her age in the play area, looking at books or toys with their parents. Oddly I was searching within, trying to gauge what I was feeling. Came up with... nothing. Nothing? I tried to look beyond the nothing, find the repressed pain that must be there hidden deep down. Nope didn't find it. I heard Sophie's hum several aisles over and went to join my husband. I looked at her at her most "Sophiest"; running, flapping, wild hair flying which she swipes distractedly to the side out of her eyes, head held proudly. Realized something at that moment. Comparing Sophie to those girls in the play area is like having a kitten and pining for a puppy instead. A kitten will never be a puppy or behave like a puppy and if you try to make it so you will just miss out on the amazing kitten moments. And this isn't to say autistic people are aloof like cats while neurotypicals are affectionate like dogs. Substitute apples and oranges if that makes you more comfortable.

Sophie and her beads

Sophie makes me the happiest when she is in her element, doing what she loves the most. My goal is to focus on trying to pull that out of her- her loves. The patterns, the paths, repetition, sequencing. Today it's bead mazes tomorrow who knows? Mathematical equations? I am in no way insinuating Sophie is a genius like the boy in "The Spark". But I think the message of the book is to find what drives our kids and use that to spark other interests. It is something I also feel strongly about, for all my kids not just Sophie. I want them all to find their passion, something that will get them out of bed every morning and excited to start the day. The last thing I want is for them to meander aimlessly through life, bouncing from one destination to the next, sighing petulantly "I just don't know what to do with my life!"

Mother's Day isn't done yet. We had burgers for lunch and then some broke for a nap. If the weather cooperates we want to squeeze a walk in after. I will continue reading my book now. Will let you know what I learned when I'm done. Happy Mother's Day to all moms!

 

5.08.2013

Just the way you are

I've been thinking. Well I am always thinking but this time I've decided to share what I am thinking, which was very hard actually.

Perhaps if you're read my previous posts you might have read some snide asides regarding neurodiversity. I've looked through some things I wrote and thought maybe I miscommunicated my feelings. While I am trying to process my own feelings and find my own way as an autism parent it is never my intention to insult or mock people (adults) who live with autism. If you are reading my blog I hope the overall tone is that of acceptance, love and awe even, never of negativity or animosity. So I decided to set the record straight. Not for any one person or organization, but for Sophie, whom I have no doubt will read this blog one day.

Dear Sophie:

Listen up good baby girl

Emotions are hard for me. I hide behind sarcasm when I feel most vulnerable, that's how I cope. Sarcastic wisecracks are like a wall between myself and emotions I don't want to feel. I am also wary of people, especially those who ban together and proclaim themselves "an organization". I often scoff at their ideas before giving them much thought because of being sceptical of their motives. It might not be right either but that is me, your mother.

This past year started off rough. We heard you had "global developmental delay and autism". We were handed pamphlets and were told it is "okay to grieve". Social workers asked how we are "coping". Many well-meaning people expressed their sympathies. In other words we were treated as if we had a tragedy happen in our lives.

Well guess what? You are anything but a tragedy. When you were a baby we called you our sunshine and you are still that. Your smile lights up the room. Spending time with you is one of my hobbies and I'm not just saying that because I'm your mom.

I want you to feel good. I am giving you vitamins not to "cure" you but to make you strong and healthy. I put you on the gluten/casein free diet because your digestive system had some issues and the diet seems to be helping. I want you to communicate not so that you appear "normal" but so you can express your needs and opinions. I know you are very opinionated, I see that twinkle in your eye.

If I seem to falter, if I am overwhelmed, if I am sad even, it is never because of you. It is because of me. I worry if I am enough, if I am doing enough, if you have everything you need to thrive. I know your potential is incredible, so incredible that I wonder if I will be able to give you the support you'll need to accomplish all you will want to accomplish.

Sometimes I feel afraid. I am not afraid of you, or even for you. I am simply afraid of the unknown, of being on a path which I don't know where is leading, of encountering obstacles I am not sure how to handle.

I don't have all the answers. In fact I feel I just skimmed the surface. But I will never stop learning and I hope you are willing to teach me. You have taught me quite a lot already!

If you only remember one paragraph from this post make it this one. You are awesome. You are loved. I am so very proud to be your mom. I would not change one thing about you. You are perfect, just the way you are.

 

 

5.05.2013

Genetics, including annoying little brothers

We went back to Sick Kids hospital last week to meet with the neurologist and go over the results of the sleep study Sophie had back in December. We learned Sophie does not have seizures at this point which we sort of knew but it was nice to confirm. The neurologist did warn us that seizures are unfortunately quite common in autistic children (she said 25 percent have them). We also talked about the upcoming MRI she will have, which I am not looking forward to at all. The good news is that this will probably be the last medical test for a while, provided nothing changes. While the neurologist admitted that most likely the MRI won't provide any answers, they do want to just rule things out because of her regression and her large head. As a funny aside when we were talking with the neurologist and asking lots of questions, she asked if we have a background in medicine :-D. It does feel that way sometimes, doesn't it.

She also referred us to the geneticist at Sick Kids because Sophie does present with some unique features they want to investigate (hypo pigmentation, large head, coupled with the regression and low muscle tone). So, yay possibly more blood work is in our future. I do hope some genetic markers will be identified one day. It is a touchy topic for sure and I do understand both sides of the argument. Identification could lead to increased abortion rates, an "extermination" (what a horrible word that is). For me the main concern is Sophie's siblings and their own reproductive futures. It appears that autistic traits increase in magnitude from one generation to the next. What could be considered "quirky" in our generation, or even our parents' generation led to full-blown autism leaning towards the severe end of the spectrum in Sophie's case. If we continue to extend that pattern, I would say it is extremely likely that at least one of our other 3 children will have a child with classic autism, and practically a given that there will be other "quirky" diagnoses such as ADHD, Asperger's or SPD which also seem to be prevalent in our families. It is noteworthy to mention that my husband and I are the only ones out of our siblings to have children yet so we are still waiting to see how that will develop (he has two brothers, I one sister, all younger).

But I digress. I always like to write something about Sophie in each of my posts so I am bringing the focus from eugenics back to her. She had a growth spurt recently both physically and neurologically I think. I can see some new connection was made, almost as if somebody was tuning an old radio to a frequency, kept getting static and then all of a sudden it caught and the signal became clear. Before, it was hard for Sophie to register sounds, or rather she seemed to be apathetic to them. So a motorcycle could roar by us as we were walking and she wouldn't even flinch (she had her hearing checked it was fine). Recently I noticed she started to notice sounds like this. Not only notice, but track visually- so turn towards the sound (motorcycle, garbage truck, plane) and follow it with her eyes, even turning her head to continue following. It's one of those things that just clicked into place one day, literally from one day to the next and that's why I think some new connection was made, because it wasn't something I taught her that's for sure.

With this new awareness comes a new sensitivity. She's been covering her ears a lot lately. The most unfortunate side effect of this new development is that the loudest member of our family (the little man) is paying the price. His baby screeches and fusses seem to bother Sophie now and she tries to quiet him... by putting her hands in his mouth. She seems to also be bothered by his tears so fingers in the eye should remedy that problem, no? Needless to say, he doesn't find that comforting. We've had several incidents recently of them both crying together and escalating in distress level by feeding off each other.

If I ignore him it's like he isn't here... Until he starts shrieking

This post is getting long but I will finish with a movie recommendation. I am usually wary of autism documentaries but this one (A Mother's Courage: Talking Back To Autism) was very well done and offered a balanced, compassionate viewpoint. It chronicled an Icelandic mother going on a quest to America and talking to resident autism experts (including Temple Grandin, interesting as always). It also showcased the Rapid Prompt Method and the lady behind it (a fascinating woman), but was full of many other autism experts and families. While it was mainly about severe autism, the tone was positive and hopeful. It is on Netflix, check it out!

 

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